an ordinary Mum writing about her little girls journey with Rett syndrome and our family journey through life and faith alongside her.

Wednesday, 10 April 2013

Today

Today I feel angry at the world.
I want to shout and throw my toys out of the pram and scream ''Its not fair!'
I know it wont help.I know its incredibly immature, but I want to do it anyway.
Think this has been brewing for a while..

Today has not been a good day for Seraphina. She had been up since 2am...but didnt seem to be anything particularly wrong..she was a bit wriggly but nothing more.
At 8 am however when I lifted her and put her down to change her she wouldnt put her legs down..they were curled up to her tummy and she was clearly uncomfortable. I passed it off as wind or something.
By 11 am she was in agony, I flushed her TPN of and tried to get her to stand on the floor as she loves being out..she was doubled over and holding her tummy with a pathetic desperate look on her face.
I wondered if it could possibly be a urine infection and took her temp...it was elevated.
I put a U-bag on her and phoned the Community nurses just to let them know what was happening.

Suddenly the pain got worse...a lot worse.I gave her morphine but that didnt seem to cut it. I phoned the Nurses again and explained that she was gasping for breath and in a lot of pain...also that I had dipped her urine and it had tested negative for infection. She told me to go to hospital to get checked out and she would phone on ahead to let them know we were coming.

When we got there a nurse assessed her and could see she was very uncomfortable and offered us more pain relief for her which we had and then bless her, she fell asleep. she was utterly exhausted.
We then waited 2 hours to see a Dr who prodded her tummy said..hmm shes uncomfortable but not in too much pain now, take her home till the morphine wears off and then bring her back when the pain gets really bad.

Needless to say her community nurses were not impressed.

So here we are at home waiting...shes clearly starting to get rather uncomfortable again so I dont know what tonight will hold...but no one has a clue whats wrong.

A couple of weeks ago we went to Great Ormand street Hospital, Sheffield had sent her there to see if they could suggest some treatment.
We had been waiting 12 months for an appointment and hopes were high.
When we got to see them the consultant said Seraphina was exactly like another little girl with Rett Syndrome that they had treated. They want to admitt Seraphina for a series of tests on her bowel before they definitely decide on a plan of treatment but suggested (as Sheffield have) that a colectomy and stoma may be the best course of treatment.
When they said they had dealt with another little girl I said 'Oh great so its fixable then!' to which they replied..'no, we didnt manage to fix the other little girl' she has had a stoma but she is still TPN fed.

At that point I felt like my world had crashed in again ( the first time being when she was diagnosed with Rett syndrome)...I hadnt even realised myself how much I had pinned my hopes on GOSH having some miraculous 'cure' that would 'fix' the horrible pain and issues my little darling is going through.
Still I triend to make positive 'oohs' and 'ahhs' when they explained the various tests they wanted to do including mannometry and full thickness biopsy to see if Rett had distroyed the nerve endings in hr bowel... all the time thinking 'I dont want her to have to go through any of this ' and fighing the urge to just pick her up and run...as if running away would somehow make it better.

Why???....

I dont understand any of this right now.

I know God exists

I know God loves her, so much more than me...

But...

I know that some people believe that if I had a strong Faith I should 'have it all together' all the time..

But...

I dont...and right now I am struggling with all of this. I realise that some will probably judge me as lacking by saying this, Im not going to lie.

I know God could heal her. Ive been told many times by well meaning Christian friends...ones who I consider ''bigger Christians'' by far than me, that He will heal her...

But He hasn't yet.

Yes we have had improvements..she walks and that IS miraculous.particularly the way it happened.
We have had imrovements in her bowel...tantilising days even weeks where it all seemed to be going SO well...she even astounded her consultant..

and then it all comes crashing down and the pain, the sweating, the screaming and the bleeding re-occur.

I think the worst thing in the world has to be watching your beloved child suffer and being able to do nothing about it.

I have spent sleepless nights wondering if its my fault she hasnt been healed...if I could only have a little more faith...if its somehow a fault on my part for not ''believing' enough.

I dont know.

Maybe it is...

I dont get it..I seriously dont.

All I know is tonight my heart hurts SO much for my littlest daughter, my brave little warrior with a passion for Tinkerbell and Heidi Baker ( what a combination!,even typing that makes me smile ) and I wish I could make it better.She IS a miracle who desperately needs a miracle

So sad to read how much pain little S has been in lately. I hope this incident resolved and her pain subsided. I pray that a solution can be found and she will be pain free. You are both often in my thoughts and prayers. xxx

Poor Seri :( The pain, sweating, shadows under her eyes and bleeding all sound so eosinophilic. Did she get a diagnosis for that? There are treatments to help but sadly rarely cure as you will know from those of us dealing with it. xx

Hi, I just found your blog through PostPals, and my heart is breaking for you and for your beautiful daughter. I'm a Christian as well and I just wanted to say God loves you so much - just as much as he loves Seraphina. I really pray that God will provide comfort and blessing in your life.